Hi,

I'm Melissa and I'm with Jennifer in the west Denver area. She's had RSD since 1993 and is at the point where she just can't stand it. She describes the pain level as between an 8-9.5 a lot of the time now.

She's been through all kinds of treatments but because her original injury was a workers comp case and they fought her every bit of the way, they didn't diagnose the RSD in time to really help her much.

But we've been to a chain of doctors over the years.

I'm her family caregiver, I take care of her, cook meals, do wash, drive her anywhere she needs to go, etc. We live in the same household.

I've been working at keeping her going all this time, with this discouraging disease.

She's been on a host of drugs and up to 90mg a day of methadone, and is running out of hope with this.

For the last couple of years we've been hearing about amazing results, even potential cures, using ketamine infusion.

We went to see one doctor here, who had done ketamine infusions at Sloan Kettering and was very optimistic about them, but the last we heard, he couldn't get his hospital here to allow him to do it here.

We've both been on disability for different reasons since 1994 and don't have much money, we barely pay the bills. Her insurance is a medicare supplement with Secure Horizons, and we understand they still consider ketamine infusions an "experimental" treatment, despite the successes we've heard about.

The latest we've heard was that the ketamine infusions have been done through University Hospital Pain Clinic, but that of course is "experimental" and we run into the same problem, of them being "out of network" for her etc.

Even then, we tried to get a referral so we could at least fight it with the insurance company, but we suspect that some of these doctors may be playing ball with the insurance companies and not caring about helping the patients, so that fell through and now we have to start all over again with a referrral to an in-network specialist first.

It's SO frustrating, when she's at this point and everything.

But does anyone have any ideas how someone in her situation can get the help she needs, and possibly cure this horrible disease with the ketamine infusion?

Please, she needs help with this so badly.

Hi Malissa,
Welcome to Neurotalk.
My name is Alison, I am 12 years old and I suffer from RSD/CRPS in my left leg and right arm. I first developed RSD in my leg in March 2007 after an ankle sprain, I was diagnosed with RSD 4 months later.
2 months after diagnosis I was prescribed Amitriptyline, and I suffered a nasty side effect of "blurred vision" which resulted in a knock to my right arm, I was later diagnosed with RSD. The RSD in my arm's been in remission, but unfortunatley I knocked my arm on Sunday and the RSD's flaired back up.

Where does Jennifer suffer from RSD?

I don't know a lot about the Ketamine infusion, but I have heard that it CAN be very useful. A 17 year old girl called Vanessa who suffers from full body RSD is hoping to get the "Ketamine coma treatment" soon. This will give Vanessa an 80% chance of getting better.

You are such an inspirational person, I am so proud of what you are doing, I know how heard dealing with RSD is. My mom is my full time carer. My moms dealt with a lot of neurological diseases during her life including MS and Parkinsons disease. I am so grateful for everything she's done for me.

I know that not many people are on Neurotalk at the moment, but people should start coming back on after the Christmas period.

Take care
Love
Alison

Welcome to the forum.

I wanted to say that I live in Co. and I don't know if you have checked at the University of Co. they may have the Ketamine infusions.

I went to the U of Co. for a few years but they just couldn't help me due to too many problems. I have a Thoracic Specialist, a Pain Dr. a Pelvic Pain Dr. and a Othropedic Dr. there that I went to but the pain Dr. I didn't like. He may be gone by now though. I had a good one there and he moved to a different dept so I ended up with this other Dr. that was useless. I had a great Orthopedic Dr. and Thoracic Dr. but as I said the pain Dr. was lousy.You might want to check there now. It's been about 2 years since I went there and they may be more expanded now to more options for the RSD.

Ada

Hi Melissa and Jennifer,
It is so nice to meet you. Unfortunately with ins co's they are all a mess as far as I am concerned too. I've had RSD for almost 3 years now and I have been completely disabled for that long too. It is terrible and depressing. Thankfully, you both have each other to lean on. You are lucky in that respect. My family STILL doesn't get it and I have about given up with all of them.

I believe there is a doctor in Arizona named Dr. Haliburt or something like that who does Ketamine. Do a google search for doctors in Arizona and RSD and his name should come up. I hear he is pretty good but I don't know too much about that area since I am on the east coast. I have been waiting for Ketamine for 13 months now. I am praying my work comp will pay for it because they have not told me otherwise. I had the Lidocaine IV done in June 2006 and it worked but not for very long. Have you been able to fight your insurance company's decision?? You have that right. I have a chiropractor that specializes in neurological illnesses and I am using cold laser therapy that is helping too. Keep hanging in there and don't give up!
Good luck,
Sorry I could not be more help.
kathy d.

There is a wonderful doctor in NYC that does ketamine infusion- if you are interested let me know-
Just want to say (without bursting anyones balloon) that ketamine tx is not the miracle or cure all you may think it is. It didnt work for me at all and I know plenty of others who it only works for a time then wears off- I am not saying this to be a downer -just dont want anyone to put all their hopes in this 1 tx. If you go on RSDhope.org you can read more about ketamine

Hello everyone,

Apologies for my absence--things are rotten at the moment but I just want to say that a singular sub coma ketamine Infusion is probably not going to bring about a huge change in pain levels for a long period of time. It does for some but not for many
It should never be regarded as a "once off " treatment as there needs to be follow up infusions to attain the best results.
Please let your doctors know that this is your preference.
I wonder just how long it will take the AMA to realise that this is NOT an experimental treatment--it is in fact regarded as a proven method of pain management in CRPS by the World Pain Association.
Cheers to all for a wonderful Christmas
Love Tayla

There is a doctor in Arkansas***:

Doctor Ronald Harbut

Mission Pain Medicine Consultants & Neuropathic Pain Center,
One Mercy Lane, Suite 106
Hot springs, AK 71913 Phone - 501-622-4878 or toll free at 800-345-6621 ext. 4878

I believe Dr. Harbut does the low dose Ketamine infusions.... The high dose coma version is not allowed in the United States at this time due to FDA restrictions.


***This information came from the RSDHope web-site.





Abbie

Dr Harbut was one of the very first doctors who learnt about Ketamine from Dr Graeme Correll. He travelled to Australia for the trial and then took what he learned back to the USA.
I think he would be an excellent choice of doctor for anyone who can access him in Arkansas.
Unfortunately I believe that coma therapy is also a long way off being approved here in Australia even though the sub-coma has been approved and paid for by our medicare system for many years.
It is a shame that Germany and Mexico are the only places available---this certainly puts this form of treatment way beyond most of us I would think
Merry Christmas
Tayla